sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I hear ya'. I had a lot of dementia type symptoms come and go. It's gotten better and better with treatment. Sometimes you can all of a sudden stir something up and it comes back. I think it's just part of it, nothing out of the norm for Lyme.
When my cognitive symptoms were bad, I'd joke that without the cognitive stuff, Lyme was just pain and fatigue! The cognitive stuff kept things interesting and funny.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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adamm
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posted
Yeah--this is wild. Even my neuropathy is improving, but my mind continues to deteriorate.
Which do you figure is more likely: that these are herx symptoms which are for whatever reason only affecting my
cognition, or that some independent disease process like babs is causing the worsening
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I want to put a vote in for toxicity. I had done four months of Levaquin and started getting symptoms like this. I quit all abx per LLMD and focused on aggressive detox (nebulized glutathione, sauna, detoxifiers and charcoal, lemon water, exercise, milk thistle) and it's pretty much gone. Sometimes there's just too many toxins--bugs and drugs--and this happens. You gotta get it out.
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adamm
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posted
up for more guesses. sorry--I've just really been in panic mode lately.
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posted
Cholestyramine, charcoal, Benadryl, Emergen-C, and hydrogen peroxide foot baths---those are all good agents to combat the toxicity.
Joyce (cypriane)
-------------------- Dallas caregiver for husband Steve who has Bb, Cpn, Mpn, EBV, CMV, other Herpes family viruses Posts: 51 | From Dallas, TX | Registered: May 2008
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Vermont_Lymie
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I get cognitive herxes too. Sounds like it might be working for you. Hang in there!
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pamoisondelune
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Member # 11846
posted
What are you using for detox? That's what i thought when i read your post, then i saw other people suggest the same thing.
You'll feel much better if you do detox, as people stated above. Toxicity can cause permanent damage, so you'd BETTER use some detox.
Pulling memories up, may not be accurate, but did i hear that Rhodiola is important to combat toxicity damage in the brain? Or was it CoQ10? I think someone read a book "Rhodiola Revolution", and that was an important idea.
That was my complaint about my LLMD--- he just let me SUFFER on those abx. I had to start herbals by myself, 2 1/2 years later.
It makes a huge difference if you do herbal adjuncts. On abx alone, i could work only 3 to 5 hrs a day, needed lots of naps. With herbals and supplements, life is normal.
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pamoisondelune
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posted
PS And are you taking lots of herbals or supplements that are antiinflammatories and anti-oxidants?
Here's a quote: One of the biochemical changes found in essentially all neurological, neurodegenerative, and neurobehavioral diseases is the overexpression of oxidative free radical compounds (oxidative stress) that cause lipid, protein, and genetic structural changes.5-9 Oxidative stress can be caused by a variety of environmental toxic insults, and when combined with genetic factors, pathogenic processes could result.10 An attractive hypothesis for the causation or promotion of neurological disease involves chronic bacterial or viral toxic products, which result in the presence of excess reactive oxygen species and culminate in pathologic changes.11,12
----- Garth L. Nicolson, PhD
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adamm
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posted
Darn--so do I need to pull all the abx, or can I detox while taking them? According to Dr. B's guidelines, the bile acid sequestrants generally won't bind a prescription medication unless the two are taken within an hour of each other...
Would the glutathione and milk thistle they sell at Walgreens do the job if I took them together? I'm currently taking grape (not grapefruit) seed extract.
Ah Crap
So are the Lymies who naturally have problems detoxing typically unable to get back to 100%, mentally? Is it likely I've already done some irreversible damage at this point?
pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
Yes, concurrent! Take the antioxidants, antiinflammatory supplements, and dtox concurrently with your abx, as far as i know.
As for me, i take lots, i don't stop at one, two or three. I generally forget what they're good for exactly, but later i read about each one that it does something good and different.
As for permanent damage, i wouldn't worry about it. Garth Nicholson was talking about Alzheimer's, Parkinsons patients, etc.
---pamois.
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adamm
Unregistered
posted
Okay--good news. I just got the results of a liver function
test I had last week, and there's no evidence that
that organ has suffered toxic damage. I also got a script for some
Welchol, which I'll begin today, along with epsom salt baths
and possibly Green Tea extract, depending upon whether
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Yes, it's good.
I also have found help from coffee enemas (make your liver produce glutathione), burbur extract, drinking water/green tea, FIR saunas, cholestyramine, chlorella, zeolite and epsom salt baths.
I have recently started oral glutathione and it seems to help more than the prescription cream I was using before.
I drink whey protein shakes once or twice daily (glutathione precursor). I also take NAC and ALA as glutathione precursors.
I have done the detox concurrently with treatment.
The number one most helpful detox item for me and one that gives noticeable relief (and noticeable decline when I stop them) is the coffee enema. It's so dramatic that my 20 year old non-Lymie daughter does them when she's sick.
Judging by the short time you've been on these abx and your increase of symptoms, I'd say it's a herx ..... which means you do have toxins to address.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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pamoisondelune
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posted
Here's a quote from the other thread "Topic: "Distinct pattern of cognitive impairment noted in study of Lyme patients " posted by cave76.
"4) Neurotoxic substances produced endogenously or possibly exogenously -- Endogenous neurotoxins have been identified as by-products of the humoral immune response. Among these is quinolinic acid, a product of the interleukin cascade system, which accumulates as a result of the humoral response to acute infectious agents and functions as a neuronal excitotoxin.
"As there are many similarities between Lyme Encephalopathy and the nonspecific mental dysfunction of acute systemic infections, such as influenza, it is quite possible that continue stimulation of production of quinolinic acid and other cytokines plays a role in the pathophysiology of Lyme encephalopathy" END QUOTE
It's the quinolinic acid that Rhodiola helps protect from, i think; i haven't looked it up.
Don't neglect anti-inflammatories and anti-oxidants. I think they can help too. Actually i never did much detox, just lots of anti-inflammatories and anti-oxidants.
---pamois.
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sixgoofykids
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Member # 11141
posted
My LLMD has me off things that are overstimulating to the immune system - like Transfer Factor. It is good for some, but at this point in my treatment he thinks the cytokines are probably causing the issues.
However, you are earlier in treatment, Adam, so I'd say it's one of the bugs that needs to be treated.
Keep detoxing. Keep taking meds. Support your immune system. Get enough rest. Exercise as you are able. Drink lots of water. I'd say the Ceftin/Biaxin is just doing a great job for you right now.
You will get better. I am nearing feeling 100% .... today the only thing that is bothering me is my left shoulder. My thumb hurt for a few minutes. That's it. I got here with aggressive abx and aggressive herbs and aggressive detox. Hang in there.
If you have babs, you should be treating it. I'm still on aggressive babs treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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adamm
Unregistered
posted
Yeah--neither of the LLMD's I've seen thought I
had Babs. They told me that there's generally
present with at least intermittent fevers, and that they generally have
posted
Okay--update. Day 7 with this crap, and it's still quickly getting worse. Does this situation call for emergency IV intervention?
It's not so much that the process of thought formulation is slower, but that the thoughts themselves are rarely logical. 2 and 2 just do not get put together anymore...
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I would treat the bart more aggressively. Sometimes the benefits of the meds outweigh the risks. I was on Biaxin daily for 9 months and my head never cleared until I took something more directed to the Bart.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Vermont_Lymie
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posted
Adamm,
Welchol (must take 3 hours away from abx in middle of day) helped to clear my head when I was feeling herxy.
Ceftin was rough for me too during the first 3 weeks.
You should make medical decisions in conjunction with your doctor. Although it is good to seek the advice of lymenetters, as you can see, there are many different directions suggested and in my opinion, medical decisions are best made between you (and all your research) and doctor.
Feel better soon.
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Rianna
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posted
Drug holidays are needed I am with CD57 my LLMD gave me a drug holiday Jan-April and worked on detox and all the mental stuff went I did
Then back on IV AB's and its getting real bad again so I may have to take another drug holiday
I think its a balance to get a high kill rate and then off for a intense detox - I continue intense detox all the way through my AB's but I know mentally its probably building again
posted
my thoughts are that you are pulsing and the spiro is not going into cyst form. therefore it is going to get killed and you feel the cytokine explosion in the nervous system..herxes are worse when you pulse..
Posts: 593 | From long island ny | Registered: Apr 2006
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jamescase20
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posted
I would take massive SSRI anti depressants...as they def get into the head.
you should read about how ssri's seem to enhance the immune system.
I def believe it...as I took, and take them and noted results.
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adamm
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posted
I actually did begin taking Prozac right after the onset of this symptom, for the reasons you described.
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Taking something to boost acetylcholine can help greatly with brain function. The borrelia toxins inhibit acetylcholine. Acetylcholine is involved in learning and memory.
There is a list of supplements in the article above. I take phosphatidylcholine, huperzine a, choline and inositol and CDP choline.
Raising acetylcholine also helps me a great deal with air hunger.
Lyme spirochetes make excess ammonia. If your gut is not working properly or you have a genetic mutation that inhibits your ability to remove ammonia, you can end up with an excess which can affect brain function and cause fogginess.
To remove excess ammonia try l-ornithine or yucca.
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